The Families Behind Autism Spectrum Disorder

Unlike so many researchers of Autism Spectrum Disorder (ASD), Cherie Green gets out of the lab and into the homes of families dealing with the disorder to learn how they function under extraordinary circumstances.

I first met Ryan* at the beginning of my PhD. He was four years old, and had Autism Spectrum Disorder (ASD). People who are unfamiliar with ASD often associate it with the movie Rain Man, or with individuals featured in the media who have an extraordinary skill in a particular area, known as ‘savants’. But, as the name implies, Autism Spectrum Disorder really is just that, a spectrum, and represents a range of individuals who are mildly affected to those who are completely non-verbal and require constant support.

Ryan was on the severe end of the spectrum. He only had a few words, and the walls of his home were covered with labelled pictures. His parents were younger than me, and they had three other children. I went into their home with the expectation of chaos. How could a young couple with several children, one of whom was severely affected with ASD, not be in a state of chaos? But I was young and naïve: I was 25 years old and at the beginning of my study.

What I saw when I entered their home was a young mother who loved this little boy unconditionally: who became an ASD expert and made their home ASD-friendly, all for him. I saw a father who went out of his way to make sure he was home during the appointment. And I saw siblings who were pointing to pictures and labelling them for the boy – they had become little ASD therapists. I was blown away. Here was an ordinary family in extraordinary circumstances, and they had risen to the challenge with 100% commitment.

With my research, I was trying to find biological differences that might differentiate subgroups within ASD, specifically differences in physical growth. The terms ‘research’, ‘science’, or ‘experiment’ often conjure thoughts of a mad scientist in a white lab coat, placing electrodes on every inch of some pour soul while poking and prodding them as if they were a guinea pig, looking for a spike on a computer monitor. In reality, all we really want is to wear jeans to work and for our participants to be as excited as we are about our research. If the data we collected support our hypothesis, then that’s great – we can make some claim about the average person in our study, and that’s usually all we hear about through the media. Smokers have, on average, an increased risk of cardiovascular disease. On average, children with autism have larger heads. But what about the rest of the story?

There’s a very human side to research not many people know about. In some cases, the ‘average’ isn’t the exciting part. Sometimes something else happens – something that moves you, something that changes your perception.

Ryan’s family opened my eyes to the real side of ASD, and there were so many other families after theirs who did the same. I could tell you about the ‘averages’ in my study, but instead I want to tell you their story. Not very scientific of me, I know. The results of my study will get out there, but the real story may not – the real story these families wish someone had shared with them when they received an ASD diagnosis.

I saw over 100 families as part of my study, and because of the difficulties involved with travelling to a new, far away place with a child with ASD, I offered to see families in their home. These families welcomed me into their houses and shared their stories with me. Some were well off and some were working multiple jobs to make ends meet. Some had children who were severely affected by ASD, while others might merely come across as ‘quirky’, but for many of them, their stories had a common theme: they were grieving.

We typically associate grieving with death; however, you can also grieve an idea, or expectation. When parents are awaiting the birth of their child, they are filled with expectations – a happy healthy baby, who will coo at them, and grow into a tiny little person of their own. They expect birthday parties, sports, music recitals, sleepovers, first dates and graduation. They expect big fancy weddings and tons of grandchildren. When something threatens these expectations, and they become more of a possibility or hope than a sure thing, we eventually have to adjust our expectations, and we are left grieving the loss of dreams that are so often taken for granted. This sudden shift in reality blindsided so many of the parents I met, and they suddenly found themselves grieving without even realising it – and without any warning.

The experience of grief is generally thought to occur in five stages: denial, anger, bargaining, depression and acceptance. Not everyone experiences all five stages, or experiences them in that particular order. This is especially true in the world of ASD, where one child can be so completely different from the next that parents are often left with more questions than answers. After receiving a diagnosis, parents often feel as though they are left to fend for themselves.

Facing an uncertain future with no clear direction as to how to proceed can stir up a range of conflicting and confusing emotions. It wasn’t uncommon for there to be both tears and laughter during my conversations with these parents.

Often, before a child is even assessed for ASD, parents can be in denial. Family members tell them Uncle Joe didn’t talk until he was three years old, and how their cousin Stephanie colour coordinates everything in her house. They hope for the best. They are told by their paediatrician that two years of age is too young to diagnose a child with ASD, and it’s better to take a ‘wait and see’ approach. They wait. They look online and decide that, because their son smiles at people and makes eye contact, he can’t have ASD. They’re convinced. They may be convinced even after a doctor tells them their son has ASD. After all, she only saw him for a couple hours. He was having a bad day; he didn’t sleep well the night before. What does she know? She probably doesn’t even have children of her own. In some circumstances, it can be extremely difficult for parents to come to terms with the difficulties their child is experiencing.

Initially, it’s easy for parents to be angry at the doctor, or at whoever suggested their child might be experiencing some difficulties. Sometimes parents are angry at themselves – for waiting too long, for not trusting their gut instinct and insisting on an ASD assessment sooner, for explaining away the warning signs, for having ‘bad genes’.

One mother, whose daughter was diagnosed with ASD as a toddler as part of another research study, told me she was angry with that researcher for quite a long time. She didn’t want to believe there was anything ‘wrong’ with her daughter, and blamed the researcher. I was seeing her as part of my own study two years later. After she recounted her story of how angry she was in the past, she laughed and said, “You can tell Jessica I’ve forgiven her now!” She went on to tell me how, although it took a long time to overcome her anger, she was now thankful her daughter was able to be diagnosed at such a young age and receive the intervention she needed.

Other parents recognised the signs early on, and had to fight their way though a system that seems to be designed to delay – convincing doctors that something wasn’t quite right, getting a second opinion, being put on a waiting list for an assessment, waiting for therapy. Even if parents weren’t in denial about their child’s ASD diagnosis, they were often stuck in a frustrating cycle of waiting, while precious time for potential early intervention was slipping away.

Once parents began to recognise their child’s limitations, they sometimes moved into a stage of bargaining. They would do anything to ‘cure’ their child of ASD. They spent every last cent they had on any intervention, therapy, remedy, or diet they could get their hands on in the hope of overcoming ASD. For them, it was something they could fix if they just tried hard enough.

For some parents, depression canunfortunately be a very real part of the grieving process. Many parents described feeling ‘stuck’: unable to do anything because they were so overwhelmed with heartbreak. Sometimes their partners were in a different place emotionally, and so they felt alone. Other times it was the news of their second or third child being diagnosed that left them feeling overwhelmed and distraught. Others described feeling helpless – they felt they had no control over the situation, or had been fighting a long battle to gain support for their child in school.

Eventually families move through this process, come to terms with their child’s ASD diagnosis and accept it for what it is. The label doesn’t change their child. Their daughter is still the same little girl, with likes and dislikes, and her own personality. The label is merely a way to understand their daughter. I repeatedly heard from parents that getting a diagnosis and becoming aware their child had ASD was half the battle: from there they could begin to understand their child more, and help the world understand their child as well.

Here is where we’ll stray from the ‘traditional’ stages of grieving. So often with these parents, something miraculous and beautiful happened once the grieving was over. Suddenly, parents went from accepting their life with ASD, to becoming advocates for ASD. They started playgroups and support groups in their area for other children with ASD when there were none. They created networks with other parents advocating for children with ASD. They organised movie nights for siblings of children with ASD. They started a petition for an ASD-specific school in their area. These parents not only made it through the grieving process in one piece, but they rose above it: not only to further help their own child, but to help other children and their families as well.

Many of the families I saw had come through the other end: they were still whole, and even stronger than before. Some were still at the beginning of the grieving process, and others were somewhere in the middle. But no matter what stage they were at, all agreed they wished someone had told them from the very beginning that they would likely go through a grieving process, and that it was perfectly normal. When families who were at the very beginning of their ASD journey shared their stories with me, they were sharing a very personal piece of themselves. As I listened, it was clear they were experiencing very raw, confusing emotions. At the end of these conversations, I took off my researcher hat and tried to offer whatever support I could. I reassured them they weren’t alone in feeling that way, and that many, if not most families, go through a grieving process. Hearing those words was like an epiphany for them – after a pause and reflection on their situation, they said, “Yes!” They suddenly had an explanation for their feelings; a context with which to process them in. It slowly started to make sense why they were feeling the way they did, and they finally began to hope that, eventually, they would make it through.

I felt it was a shame they hadn’t heard of this grieving process earlier. No one family’s experience will be like another’s, but it’s important for families to have some idea of what they might expect – because knowing is half the battle.

I still think of Ryan, and of all the other families who were involved in my study. I began my research with an assumption of what life must be like for these families, and came out with a newfound appreciation and deep respect for everything they had been through, and for everything they do for their children and for the ASD community. Ryan’s family, like so many others, had come out the other end with a strength and determination I’ve never seen before.

I hope this story reaches as many people as possible – friends, family members, clinicians and researchers – so we can all come to appreciate the journey these families must go through. I firmly believe that, with the appropriate support and resources, these families can continue to make it through to the other side – whole, and stronger than before.

*All names and personal details have been changed to ensure the privacy of those involved.

Cherie Green is a postdoctoral research fellow at the University of Melbourne. She moved from California to Australia in 2008 and completed her PhD at La Trobe University. She has previously worked assessing toddlers for ASD and is now working on a study investigating possible genetic causes for ASD.

Stories from the Ivory Tower is an online series of creative non-fiction essays that draw their inspiration from academia. These commissions are made possible through the University of Melbourne’s Cultural and Community Relations Advisory Group (CCRAG).